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NIH Clinical Research Trials and You

List of Registries

What is a registry?

A registry is a place to store detailed information about people with a specific disease or condition, who provide it on a voluntary basis. Registries can provide health care professionals and researchers with first-hand information about individuals with these conditions, both individually and as a group. Sometimes, the information can be de-identified to protect the participants’ privacy. With their permission, registries may also be used to identify individuals who are eligible to participate in research studies.

How is a registry different from a clinical trial?

A registry is a voluntary collection of information about individuals with certain diseases or conditions. A clinical trial is a research study in which some individuals receive an experimental intervention, and are compared to other individuals with the same condition who receive the standard intervention or no intervention; the results are used to evaluate the relative effects of the interventions on health-related outcomes. Individuals can choose to provide information to a registry even if they are not interested in participating in a clinical trial.

List of Registries

This website lists those registries that are active and directly NIH-funded.

This page last reviewed on February 6, 2014

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